Help Callum fight chronic illness
Donation protected
Hello there,
I’m Callum Hurley, and I’ve set up this campaign in the hope of seeking your help towards funding to both assist covering my considerable medical expenses, and to generally help improve my circumstances after my life was turned upside-down by chronic illness.
I’ve been seriously ill for over three years now, and as a result my once wonderful life and promising career have been utterly lost, despite my best efforts to fight back and hold on to all that I love.
Throughout 2017 my health worsened at a rapid rate, sending me pinballing around doctors and hospitals with no end in sight. Many possibilities have been both suggested and rejected by many doctors all over the medical spectrum, ranging from ALS to ME, but in truth even now nobody really knows why any of this has happened. My official diagnosis is one of Fibromyalgia and functional neurological disorder, complicated and indistinct conditions which are poorly understood by modern medicine and even less so by the doctors on the ground themselves.
As such I have been through a long and demoralizing struggle to even get recognition of any kind (it having taken almost two years to reach a diagnosis at all), and for long periods have had to struggle to survive almost completely alone whilst in appalling suffering, and at the same time as battling debilitating muscular issues including those impairing my ability to both walk and swallow. During all of this I lost many thousands in medical bills striving to find anything at all that might help, leaving me desperate and without hope.
However, within the past few months, I have at last begun to discover causes for hope for the first time in years, and it is this that has at last given me the courage necessary to reach out after spending so long in isolation and denial.
As such I dearly entreat the mercy of sympathetic and compassionate people to support me in this effort, by whatever means they can spare.
My Story so far:
It all began in 2014, just after I had graduated from Sheffield University with a 1st class honors in Biology and was ready to embark upon a career doing what I loved, helping to fight for and conserve the beauty of our natural world.
It was around this time that I had lost my Father to a tragic accident whilst he was teaching abroad in Thailand, an event which shook me to the very core and left me with a grief that those who have lost a beloved parent will know. My Father had been my mentor and hero, and it seems to have been this shock which first triggered the cascade of nervous system and/or autoimmune dysfunction which eventually grew to consume my life.
Almost immediately my once fantastic health began to collapse. I soon began to suffer with a truly baffling array of seemingly unconnected illnesses and pains that took me to every corner of the medical world, but despite literally hundreds of tests nobody could find any hint of a reason why. Once I had been strong and full of youthful fire, working tirelessly in forestry and academia, an enjoying the opportunity photographing wildlife all over the World. Out of nowhere, that was all gone in an instant.
Initially I responded mostly with denial, a lie that despite my best attempts I could never fully sell, as I could always still feel the illness advancing inexorably. Even as my old life fell apart I fought so hard to defy it. Deep down though I knew that, far from the many decades that I had expected, I was running out of time to enjoy life’s normal experiences.
I spent those early days mostly travelling around the World alone with my Father’s legacy, in a desperate effort to drink in every inch of beauty and life that I could whilst I still had the opportunity. With my huge chest of medications in tow I sailed across the beautiful islands of the South Pacific, drove through the Canadian Rockies, trekked across mountains and bathed in hot springs in Iceland and New Zealand. In my condition it was often brutally hard and lonely, but looking back I still cherish those times dearly and often look to them even now for comfort and inspiration.
But they simply could not be sustained. Eventually the illness brought me to heel and forced me to my bed for ever longer periods. Soon even my ability to live and function began to deteriorate as the infamous fatigue began to creep in more and more to every day. Always there was that crushing, inexplicable sensation similar to that of the flu, which seemed to precipitate weakness into every cell of my body.
The intensity and immediacy of that weight have fluctuated on both a day-to-day and longer-term basis, but from the day it first appeared it has never completely abated. It is as though I one day woke up with a horrible cold that has waxed and waned, but never gotten better. I recall explaining my symptoms this way to one of the many doctors I have seen, and consequently seeing upon his face a wince of pure horror that has never left me. Many others told me to my face that I was perfectly healthy and needed only to ‘buck up’ or was simply depressed (which of course I also was all things considered), often as I struggled visibly to sit upright in my very seat.
I was in and out of hospital with severe migraines, unstoppable vomiting, and even breathing difficulties. Every inch of my body became sensitive and painful like a giant bodywide headache. My thoughts slowed and became sluggish and my attention span and mental capabilities collapsed. Every bodily system and process has been affected in some way. My hands became stiff and difficult to use, like after handling snow without gloves. My legs became wobbly and uncooperative. I began to struggle to swallow to the extent that I would choke on every bite of food. I became so sensitive to sound that I would often wear earplugs all day long and could go almost nowhere where normal hubbub would be present, so delicate to sensory stimulus that even the colours of supermarket shelves would leave me feeling bewildered. Despite crushing exhaustion sleep eluded me, and in every moment there was pain of numerous sorts, humming together in a deafening symphony of relentless misery.
Eventually I received diagnoses of Fibromyalgia and CFS/functional neurological disorder. As pleasing as it was to have a name anyone familiar with these indistinct illnesses will know how little this really means. These ‘syndromes’ are more broad descriptive labels for symptoms and can be due to a diverse array of poorly understood causes - both physical and psychosomatic; rather than the more specific conditions we are used to. Even after hundreds of hours of reading, consultations, clinical trials, and research, it would reach far beyond my station to suggest anything authoritative more than this. Indeed one specialist in the area that I consulted with also worked heavily with HIV patients, and estimated to me that the average CFS sufferer has a comparable quality of life to that of an AIDS patient in the last two weeks of their life. Research and awareness into this area is severely limited and direly needed, but thankfully seems to finally be beginning to gain traction in the last few years.
I tried every drug and alternative treatment imaginable with an almost obsessive zeal and at a personal expense of many thousands of pounds, to no avail. Some seemed to help at first or provide short term relief, but nothing slowed the decline.
I feel I should note at this point that, despite the innate difficulty presented by a condition like this and those unfortunate early experiences, the NHS have been incredible and done absolutely everything they could possibly do within their power to help me. Despite the awful underfunding and logistical challenges it currently faces in them I have found my closest ally of all. Even the doctors who initially marginalized me were eventually won over by experience and conscience in the end, and it has been a growth and learning experience on both sides. The NHS truly is the soul of the nation and it’s greatest social and ethical achievement, there could be no current cause more worthy than it’s protection
Over time, via a combination of isolation and contempt I lost almost all of my friends and family, save for a precious few, and was left to fend (very poorly) for myself. Often I desperately sought for sanctuary and care but those in a position to help were utterly unwilling to compromise their own comfort to help one whom they didn’t even ‘believe’ was really ill, leaving me with no other choice but to struggle by alone.
The constant pain ravaged my mind and left me with severe PTSD responses to even the mere mention of pain or illness, and constant nightmares assaulted me at night.
Despairing and hopeless I eventually reached the lowest point. Seeing no other option I sought out self-euthanasia as a way of ending my suffering, desperately wanting to live but facing the crushing notion that I would likely never again be able to do so. Multiple times I cam very close to death only to relent at the very last moment.
Ultimately it was this that seems to have been the catalyst for what followed, as despite not quite understanding why I simply felt in my heart that I could not go through with it. At first this was devastating, but over time I came to feel that it wasn’t fear or weakness that stayed my hand, but the feeling that I still had some destiny to see through, a duty to pull something good from this god-awful mess.
Working in the Caledonian Forrest in 2013 - At the peak of my health and fitness
2018: Hope, and a plan.
With my continued existence established something quite unexpected began to happen: I stopped getting worse and even began to become slightly better.
I found real improvement with a combination of the right drugs, specialist 'Mickel' therapy, and an experimental treatment (originally developed for Parkinson’s disease sufferers) wherein a device electrically stimulates the vagus nerve in an effort to ‘rebalance’ the nervous system. To my utter amazement this actually helped! For the first time since this all began the illness seemed to betray a hint of fallibility.
Still my capabilities are still very limited and my quality of life low, but it is a vast relief compared to the previous downward spiral. Now as long as I do little and carefully I can manage with reasonable independence.
Yet most importantly I found the resolve to use this opportunity, meager though it still may be, to make a real concerted effort to finally improve my circumstances and do what I can to retake some ground from the illness.
I had long previously been involved in crowdfunding as a means of reaching out and helping others and thus I was aware of what it can achieve. In the past I have donated to many causes and made many contacts and friends via doing so, and the idea gradually began to grow in me that I could try to utilize the awesome power of the internet combined with good people working together to do what I alone could not. Not just via donation, though that would certainly be a part of it, but via the spreading of the message and the hope that there are those out there who might be willing and able to help me where my own family were not. If my plight could go ‘viral’ it could reach the ears of so many that anything was possible
Unfortunately of course the financial reality is a grim one. When my Father died he left what wealth he had to me, and were it not for this I certainly would not have survived. However years of being unable to work as well as being rejected for welfare support have left me in dire straits. This is largely due to the contentious nature of my condition, the length of time it took to achieve a diagnosis and the difficulty in proving it, alongside the currently tragic state of the UK welfare system due to the current UK Government’s appalling apathy for the disabled and disadvantaged (the nature of the experiences I have had there and horror stories I have encountered is something I will not foul the air with here).
Factoring in the many thousands that I have lost in medical expenses my means are all but exhausted, and I am dangerously close now to lacking even the capability to survive. To repay these debts alone will require large sums, and to achieve stability in my current situation and develop the potential to move forward I will need to rely upon the kindness and generosity of strangers.
Long have I procrastinated in this realization, telling myself that if I waited just a little bit longer it might not be necessary to resort to it, reluctant to make myself a burden on others. Even with this hope there is still undoubtedly a long road ahead of me assuming it is even possible at all to reclaim my health. That said, I choose to believe that it is until proven otherwise, and it is absolutely my ambition to do so. And I really need your help to make it happen.
My Goals
Ultimately I have three main ambitions: all considered ways to enable my personal recovery and progress such that I might become a full productive member of society again.
Firstly, I have no choice but to raise money to help cover both past and future medical expenses, as well as provide a buffer means to survive where other efforts fail. This could ultimately include currently unknown costs. It has for example been suggested that I may in the future be in a position to travel to the USA for treatment at a facility specializing in functional neurological disorder. This would of course be prohibitively expensive without the support of others.
Secondly it is my ambition that, perhaps most significantly via the network an appeal like this will generate, to find other general ways of improving my circumstances and keeping my hope of a better future alive. I have long sought for example a more nurturing and rural place to live, a peaceful place closer to nature where I might better meditate and hopefully heal. I seek also to connect with other kin of mine who have been touched by illness, to find friends and allies that we might better fight it together and feel not alone.
And finally, and perhaps most importantly of all, I want to find a way to again have experiences not defined by illness and pain. Having lost my father and having no other close family to rely on I have become stuck in a practical rut, with no way to get away from my home even with what little energy I do have Were my Father here I know exactly what he would do: Kit out a camper van with a sick bed for me and drive it around the World, so that however bad things got I might still be able to crane up and see the Great Wall of China from my bedside window. This would be my very wildest dream, but even a chance to see the ocean again or a drive through Loch Lomond’s glorious mountains with a cool Scottish wind from an open window would be a dream come true. It is my dearest hope that there may be other likeminded, free-spirited friends out there who can sympathize with my plight and devise a way to help, to once again give me a compelling reason to endure all of the pain.
My aspirations will certainly require the stars to align, but are not at all impossible with the collective support of you and other compassionate individuals, united with the great power of the internet. I know now that it is possible that I will never lead anything even remotely like the life that I had hoped for or expected, and the process of grieving for that loss has been perhaps the hardest ordeal I have so far overcome. Until I can find that ellusive miracle that fate has so far denied me (and not for lack of searching), then gone are my dreams of career, family, a daughter, and so much more. Yet I know in my heart that I still have much to offer the World.
I cannot tell you how much I still miss every little memory and comfort of normal life, undiminished every single day. But with this endeavor I have hope that, if nothing else, it might be possible to feel the smallest bit ‘alive’ again.
Please give just whatever it is that you can, but if that isn’t money then don’t worry. Sharing this appeal via social media is absolutely the single most significant thing that you can do to help me, a large enough number of people together can make almost anything happen and you will be helping me to reach them all. Or, if you would be kind enough to organize or get involved a fundraising event please get in touch through this page or through the Facebook account and I will help in any way I can.
My deepest thanks and best wishes to all.
Callum Hurley
Campaign Facebook Page: https://www.facebook.com/CallumsNewHopeforFightingChronicIllness/
Campaign Twitter Page: https://twitter.com/Help_Callum
I’m Callum Hurley, and I’ve set up this campaign in the hope of seeking your help towards funding to both assist covering my considerable medical expenses, and to generally help improve my circumstances after my life was turned upside-down by chronic illness.
I’ve been seriously ill for over three years now, and as a result my once wonderful life and promising career have been utterly lost, despite my best efforts to fight back and hold on to all that I love.
Throughout 2017 my health worsened at a rapid rate, sending me pinballing around doctors and hospitals with no end in sight. Many possibilities have been both suggested and rejected by many doctors all over the medical spectrum, ranging from ALS to ME, but in truth even now nobody really knows why any of this has happened. My official diagnosis is one of Fibromyalgia and functional neurological disorder, complicated and indistinct conditions which are poorly understood by modern medicine and even less so by the doctors on the ground themselves.
As such I have been through a long and demoralizing struggle to even get recognition of any kind (it having taken almost two years to reach a diagnosis at all), and for long periods have had to struggle to survive almost completely alone whilst in appalling suffering, and at the same time as battling debilitating muscular issues including those impairing my ability to both walk and swallow. During all of this I lost many thousands in medical bills striving to find anything at all that might help, leaving me desperate and without hope.
However, within the past few months, I have at last begun to discover causes for hope for the first time in years, and it is this that has at last given me the courage necessary to reach out after spending so long in isolation and denial.
As such I dearly entreat the mercy of sympathetic and compassionate people to support me in this effort, by whatever means they can spare.
My Story so far:
It all began in 2014, just after I had graduated from Sheffield University with a 1st class honors in Biology and was ready to embark upon a career doing what I loved, helping to fight for and conserve the beauty of our natural world.
It was around this time that I had lost my Father to a tragic accident whilst he was teaching abroad in Thailand, an event which shook me to the very core and left me with a grief that those who have lost a beloved parent will know. My Father had been my mentor and hero, and it seems to have been this shock which first triggered the cascade of nervous system and/or autoimmune dysfunction which eventually grew to consume my life.
Almost immediately my once fantastic health began to collapse. I soon began to suffer with a truly baffling array of seemingly unconnected illnesses and pains that took me to every corner of the medical world, but despite literally hundreds of tests nobody could find any hint of a reason why. Once I had been strong and full of youthful fire, working tirelessly in forestry and academia, an enjoying the opportunity photographing wildlife all over the World. Out of nowhere, that was all gone in an instant.
Initially I responded mostly with denial, a lie that despite my best attempts I could never fully sell, as I could always still feel the illness advancing inexorably. Even as my old life fell apart I fought so hard to defy it. Deep down though I knew that, far from the many decades that I had expected, I was running out of time to enjoy life’s normal experiences.
I spent those early days mostly travelling around the World alone with my Father’s legacy, in a desperate effort to drink in every inch of beauty and life that I could whilst I still had the opportunity. With my huge chest of medications in tow I sailed across the beautiful islands of the South Pacific, drove through the Canadian Rockies, trekked across mountains and bathed in hot springs in Iceland and New Zealand. In my condition it was often brutally hard and lonely, but looking back I still cherish those times dearly and often look to them even now for comfort and inspiration.
But they simply could not be sustained. Eventually the illness brought me to heel and forced me to my bed for ever longer periods. Soon even my ability to live and function began to deteriorate as the infamous fatigue began to creep in more and more to every day. Always there was that crushing, inexplicable sensation similar to that of the flu, which seemed to precipitate weakness into every cell of my body.
The intensity and immediacy of that weight have fluctuated on both a day-to-day and longer-term basis, but from the day it first appeared it has never completely abated. It is as though I one day woke up with a horrible cold that has waxed and waned, but never gotten better. I recall explaining my symptoms this way to one of the many doctors I have seen, and consequently seeing upon his face a wince of pure horror that has never left me. Many others told me to my face that I was perfectly healthy and needed only to ‘buck up’ or was simply depressed (which of course I also was all things considered), often as I struggled visibly to sit upright in my very seat.
I was in and out of hospital with severe migraines, unstoppable vomiting, and even breathing difficulties. Every inch of my body became sensitive and painful like a giant bodywide headache. My thoughts slowed and became sluggish and my attention span and mental capabilities collapsed. Every bodily system and process has been affected in some way. My hands became stiff and difficult to use, like after handling snow without gloves. My legs became wobbly and uncooperative. I began to struggle to swallow to the extent that I would choke on every bite of food. I became so sensitive to sound that I would often wear earplugs all day long and could go almost nowhere where normal hubbub would be present, so delicate to sensory stimulus that even the colours of supermarket shelves would leave me feeling bewildered. Despite crushing exhaustion sleep eluded me, and in every moment there was pain of numerous sorts, humming together in a deafening symphony of relentless misery.
Eventually I received diagnoses of Fibromyalgia and CFS/functional neurological disorder. As pleasing as it was to have a name anyone familiar with these indistinct illnesses will know how little this really means. These ‘syndromes’ are more broad descriptive labels for symptoms and can be due to a diverse array of poorly understood causes - both physical and psychosomatic; rather than the more specific conditions we are used to. Even after hundreds of hours of reading, consultations, clinical trials, and research, it would reach far beyond my station to suggest anything authoritative more than this. Indeed one specialist in the area that I consulted with also worked heavily with HIV patients, and estimated to me that the average CFS sufferer has a comparable quality of life to that of an AIDS patient in the last two weeks of their life. Research and awareness into this area is severely limited and direly needed, but thankfully seems to finally be beginning to gain traction in the last few years.
I tried every drug and alternative treatment imaginable with an almost obsessive zeal and at a personal expense of many thousands of pounds, to no avail. Some seemed to help at first or provide short term relief, but nothing slowed the decline.
I feel I should note at this point that, despite the innate difficulty presented by a condition like this and those unfortunate early experiences, the NHS have been incredible and done absolutely everything they could possibly do within their power to help me. Despite the awful underfunding and logistical challenges it currently faces in them I have found my closest ally of all. Even the doctors who initially marginalized me were eventually won over by experience and conscience in the end, and it has been a growth and learning experience on both sides. The NHS truly is the soul of the nation and it’s greatest social and ethical achievement, there could be no current cause more worthy than it’s protection
Over time, via a combination of isolation and contempt I lost almost all of my friends and family, save for a precious few, and was left to fend (very poorly) for myself. Often I desperately sought for sanctuary and care but those in a position to help were utterly unwilling to compromise their own comfort to help one whom they didn’t even ‘believe’ was really ill, leaving me with no other choice but to struggle by alone.
The constant pain ravaged my mind and left me with severe PTSD responses to even the mere mention of pain or illness, and constant nightmares assaulted me at night.
Despairing and hopeless I eventually reached the lowest point. Seeing no other option I sought out self-euthanasia as a way of ending my suffering, desperately wanting to live but facing the crushing notion that I would likely never again be able to do so. Multiple times I cam very close to death only to relent at the very last moment.
Ultimately it was this that seems to have been the catalyst for what followed, as despite not quite understanding why I simply felt in my heart that I could not go through with it. At first this was devastating, but over time I came to feel that it wasn’t fear or weakness that stayed my hand, but the feeling that I still had some destiny to see through, a duty to pull something good from this god-awful mess.
Working in the Caledonian Forrest in 2013 - At the peak of my health and fitness2018: Hope, and a plan.
With my continued existence established something quite unexpected began to happen: I stopped getting worse and even began to become slightly better.
I found real improvement with a combination of the right drugs, specialist 'Mickel' therapy, and an experimental treatment (originally developed for Parkinson’s disease sufferers) wherein a device electrically stimulates the vagus nerve in an effort to ‘rebalance’ the nervous system. To my utter amazement this actually helped! For the first time since this all began the illness seemed to betray a hint of fallibility.
Still my capabilities are still very limited and my quality of life low, but it is a vast relief compared to the previous downward spiral. Now as long as I do little and carefully I can manage with reasonable independence.
Yet most importantly I found the resolve to use this opportunity, meager though it still may be, to make a real concerted effort to finally improve my circumstances and do what I can to retake some ground from the illness.
I had long previously been involved in crowdfunding as a means of reaching out and helping others and thus I was aware of what it can achieve. In the past I have donated to many causes and made many contacts and friends via doing so, and the idea gradually began to grow in me that I could try to utilize the awesome power of the internet combined with good people working together to do what I alone could not. Not just via donation, though that would certainly be a part of it, but via the spreading of the message and the hope that there are those out there who might be willing and able to help me where my own family were not. If my plight could go ‘viral’ it could reach the ears of so many that anything was possible
Unfortunately of course the financial reality is a grim one. When my Father died he left what wealth he had to me, and were it not for this I certainly would not have survived. However years of being unable to work as well as being rejected for welfare support have left me in dire straits. This is largely due to the contentious nature of my condition, the length of time it took to achieve a diagnosis and the difficulty in proving it, alongside the currently tragic state of the UK welfare system due to the current UK Government’s appalling apathy for the disabled and disadvantaged (the nature of the experiences I have had there and horror stories I have encountered is something I will not foul the air with here).
Factoring in the many thousands that I have lost in medical expenses my means are all but exhausted, and I am dangerously close now to lacking even the capability to survive. To repay these debts alone will require large sums, and to achieve stability in my current situation and develop the potential to move forward I will need to rely upon the kindness and generosity of strangers.
Long have I procrastinated in this realization, telling myself that if I waited just a little bit longer it might not be necessary to resort to it, reluctant to make myself a burden on others. Even with this hope there is still undoubtedly a long road ahead of me assuming it is even possible at all to reclaim my health. That said, I choose to believe that it is until proven otherwise, and it is absolutely my ambition to do so. And I really need your help to make it happen.
My Goals
Ultimately I have three main ambitions: all considered ways to enable my personal recovery and progress such that I might become a full productive member of society again.
Firstly, I have no choice but to raise money to help cover both past and future medical expenses, as well as provide a buffer means to survive where other efforts fail. This could ultimately include currently unknown costs. It has for example been suggested that I may in the future be in a position to travel to the USA for treatment at a facility specializing in functional neurological disorder. This would of course be prohibitively expensive without the support of others.
Secondly it is my ambition that, perhaps most significantly via the network an appeal like this will generate, to find other general ways of improving my circumstances and keeping my hope of a better future alive. I have long sought for example a more nurturing and rural place to live, a peaceful place closer to nature where I might better meditate and hopefully heal. I seek also to connect with other kin of mine who have been touched by illness, to find friends and allies that we might better fight it together and feel not alone.
And finally, and perhaps most importantly of all, I want to find a way to again have experiences not defined by illness and pain. Having lost my father and having no other close family to rely on I have become stuck in a practical rut, with no way to get away from my home even with what little energy I do have Were my Father here I know exactly what he would do: Kit out a camper van with a sick bed for me and drive it around the World, so that however bad things got I might still be able to crane up and see the Great Wall of China from my bedside window. This would be my very wildest dream, but even a chance to see the ocean again or a drive through Loch Lomond’s glorious mountains with a cool Scottish wind from an open window would be a dream come true. It is my dearest hope that there may be other likeminded, free-spirited friends out there who can sympathize with my plight and devise a way to help, to once again give me a compelling reason to endure all of the pain.
My aspirations will certainly require the stars to align, but are not at all impossible with the collective support of you and other compassionate individuals, united with the great power of the internet. I know now that it is possible that I will never lead anything even remotely like the life that I had hoped for or expected, and the process of grieving for that loss has been perhaps the hardest ordeal I have so far overcome. Until I can find that ellusive miracle that fate has so far denied me (and not for lack of searching), then gone are my dreams of career, family, a daughter, and so much more. Yet I know in my heart that I still have much to offer the World.
I cannot tell you how much I still miss every little memory and comfort of normal life, undiminished every single day. But with this endeavor I have hope that, if nothing else, it might be possible to feel the smallest bit ‘alive’ again.
Please give just whatever it is that you can, but if that isn’t money then don’t worry. Sharing this appeal via social media is absolutely the single most significant thing that you can do to help me, a large enough number of people together can make almost anything happen and you will be helping me to reach them all. Or, if you would be kind enough to organize or get involved a fundraising event please get in touch through this page or through the Facebook account and I will help in any way I can.
My deepest thanks and best wishes to all.
Callum Hurley
Campaign Facebook Page: https://www.facebook.com/CallumsNewHopeforFightingChronicIllness/
Campaign Twitter Page: https://twitter.com/Help_Callum
Organizer
Callum Hurley
Organizer
